My Tamoxifen Confession

adenacb

beaglesmom - if they are even considering tamoxifen, you must be ER/PR+ because it wouldn't help at all if you were negative. You need the estrogen and/or progesterone receptors to receive the tamoxifen (and be blocked by it). It should definitely be on your pathology report somewhere.

CTMOM1234

"Jul 26, 2010 08:21 pm Janeluvsdogs wrote:

No, no no. If I may...

Relative risk does not mean your personal risk. It means the relationship between the numbers. If 4% of women live longer than the placebo group (2%) then that's where you get the 50% number. Because 2% is 50% of 4%. That's why Susan Love goes around saying 50%.

Totally misleading to the patient.

So actually, Tamoxifen has a 97.5% chance of not working for all-cause survival.

If people are happy on their Tamoxifen, more power to them. But the stats are meager if you're node negative."

Yes, yes, yes. DCIS folks -- and even those of us with also a little IDC (I had 1.75 mm show up in my final DCIS lumpectomy pathology report), please proceed carefully before jumping into taking 1800+ tamox. pills. The personal benefit to you is likely very small, like 2-3% benefit.  And something like a 1% chance I'd get uterine/endo.cancer from taking it -- but uterine cancer mortality is far worse, harder to treat, and that doesn't even include the larger % likelihood of developing cysts and ultimately more surgery.

I find far more comfort from aging naturally than chemically. I'm in my mid 40s and like having my happy normal period, although it does seem to be coming more frequently so I'm likely perimeno. When I feel PMS, or an ache, or whatever, I don't need to get panicked and get more medical tests, biopsies, poking, waiting -- BC has taken too much from me, I want to live in LIVING not waiting for the other shoe to drop. Just my personal opinion, but I really do think there needs to be more posts like the one I quoted, before you find youself bringing on more problems.

Diagnosis: 11/1/2009, IDC, <1cm, Stage Ia, 0/3 nodes, ER+/PR+

soulswithin

I have to agree with you CTMom. All the number crunching thrown at us, along wiht drugs that aren't long term tested, and no one is even given a simple saliva test to see just what our adrenals are producing!

  Tamoxifen and Femara treatments should be guided by monthly blood tests rather than symptoms, and I can't help but believe that the reason why they don't do trials with individual doses is because their trials would fail. Think about it, if the drug is to shut down our hormones, surely some of the simple tests out there can tell them if our dosage is correct.

And could it be possible that some people get cancer returning because their dosage is wrong?

There is no better way right now, but I hate the 'take this or you may die sooner' pressure that is put on us after all we have been through. Should we be subserviant to this, and are they downplaying the side affects hoping we will just go along with the program? The 'stifle yourself Edith' feeling is unnerving to me.

The public is convinced that Tam or Fem is the only answer. But I agree, trying to make it work is good, but we all should be aware of what this is doing to our body, and I think the doctors and drug companies are downplayong that part.

Just a feeling....not that I don't appreciate our team trying to save our lives, I'm just feeling, yet again, removed from facts and hung to dry with threats and worries. We all have the right to ask these questions.

Firni

soulswithin,  I so agree with what you said about being coerced into taking these meds thru threats. When I asked my onc what if I didn't take Tamox or Fem, he said, "You'll die."  No hormone test.  No bone density test.  He did at least do a metabolizing test to see if Tamox would even do anything.  Because I'm post meno, he of course wanted me on an AI.  Too expensive so we went with Tamox.  I just had a DEXA scan done and I have significant bone loss.  (I had no bone loss 4 years ago.)  I shudder to think what my bones would look like if I had been taking an AI the past year.  And he no intention of doing any type of bone density test before or during taking any anti hormonal drugs.  The liability for these docs to not follow protocol is huge.  I do believe that many of them would like to blaze their own trail and keep us healthy while doing no more harm.  BUT, the research isn't there to support any other means right now.  If the women who are using alternative means could be honest with their oncs and someone would do the research I believe we'd all be in a better place as far as treatment goes.  But hey, where's the money in that?  

My 50 year old sister was advised to take Tamox. based on my BC history. What?????  She isn't going to take it.   

soulswithin

Firni, Did you ask your doc how soon? lol....wheres my magic, mystic, crystal ball, I'll have a look for myself too....lol.

What a bummer if we die anyway to boot!

My experience in the health issues of my past- we are often treated like a cattle farm, based purely on clinical trials dependent on the drug companies needs to promote a drug. [hence strong doses to be more effective than the previous brands] Especially after the previous drugs patent runs out. And added to that a doctors lack of time to investigate what he hears about them. After a while everyone just starts looking at numbers. Which becomes a numbers game for the drug companies, who rely on those numbers to sell their drugs.

Such is life. Or should I say, wanting a life. We all do the best we can.

I have a health net insurance, so double the difficulties and time involved to get through this.

Gettin old already, having my third margin cut tomorrow, and havn't even got close to Hormone and radiation! After 6 months! I've had lots of time to read....;)

nita1027

For Firni:

 As I am reading about your difficulties with hair regrowth, I am reminded of a problem that a friend of mine had with her hair as a result of taking DIM.  She does not have breast cancer; for some reason she just decided that it would be good for her to take DIM, and after she had been taking it for awhile her hair started falling out in clumps.  Once she left off the DIM, her hair grew back. 

Firni

Wow, nita, that is the first I've ever heard of DIM doing anything negative.  I had stopped taking the Tamox for a couple months to see if there would be a change in my hair , bone pain and hot flashes.  No change.  Back on Tamox I went.  I'll try stopping the DIM for a couple months and see if there is a difference.  I'm starting to think that some of my recent symptoms have more to do with my thyroid being so low.  I had that checked in Dec, and again last Friday.  I have to have it checked again in late Aug.  Going to a conservative PCP, it takes forever to get a referral.  I took a thyroid disease quiz on line and of 48 different symptoms listed I have 43% of them.  Combine that with my low TSH score and I could have a real problem.

Soulswithin, where is that darn crystal ball?  Maybe next time I see my Onc, I'll ask him to get out his and let me know how soon I'll die if I just try to live symptom free for awhile. haha

When I was about 10 years old, I would run.  All over the neighborhood.  Kind of like Forrest Gump.  Just because I could.  I remember how effortless it was and how good it felt.  I must have appreciated it some back then coz the memory is more of the feeling than of the running.  Oh to feel like I was 10 again.

Anonymous

I get it.  I feel your pain.  My Doc gave me a one month holiday once...took almost a month to feel much better. So, then...just as I was going back on...I had one GREAT month! 

Now, due to the cost of Aromasin...I skip one a week, sometimes even 2...I have to pay $370 and just can't afford it (no insurance). I've given myself two separate 1 week holidays. Doesn't help a ton, but...a little.  I don't tell anyone either.

Moore40

 

  I have a confession also, I have skipped my tamoxifen so many times like almost a month to be exact. I don't know why I am doing this. It's just one pill a day, but I can't make myself take it everyday and my husband gets mad at me sometimes because he thinks that I am trying to die. I am just not use to taking medication, so it's hard for me, and no one seems to understand. Someone help me to understand why I am risking my life when I have such a good life.

MelanieCancer

Thank you, Thank you, Thank you for posting this.  For over a year I thought I was the only one.  I found your blog by typing into google "I hate Tamoxifen" after taking a pill.  I hate it, it has ruined my life, I have lost my hair, I have hot flashes, I have leg cramps, and I basically feel like crap.  The problem I have had with all of this is I wasn't prepared for it.  I have been on it since August 2011 after completing my lumpectomy and radiation treatments.  I'm Stage 1 Invasive Ductal C.  The Dr's should have warned me but didn't, and I then took myself off for 4 months straight.  I began growing my hair back again and started to feel like myself.  I moved during this time and found another Dr. who I confessed everything to.  I thank God for meeting her.  She changed my meds to 10 mg of Tamoxifen twice a day and believe it or not I don't feel as bad physically.  My hair is continuing to come back.  Because of my low % chance of getting the cancer back she is willing to consider that I stay on it for 5 years and not the 10 that is now being recommended.  I mean really, ten years, the only people that figured that out have never been on it for a day.  I wish more honesty had was involved when giving Tamoxifen, and Dr's who look at the person taking the meds and not just the outcome that they are shooting for.  Work with us, we want to stay human during this process.  I hate when people congratulate me for being a "survivor" as I haven't felt that way yet by taking this Tamoxifen.  Each day now is getting a little better just 2 more years to go!

 

tangandchris

I had to take a month break from Tamox just after being on it for a month. I was experiencing light headedness and headaches...also ringing in my ears. My MO has me now taking it every other day and then after 2 weeks of this start back normal.

I don't want to take this drug!! My MO insists that she has never had a patient that couldn't tolerate the se's. She also says that bone pain is not an SE of tamoxifen, even though the pamphlet I get from the pharmacy says it is.

This is a thread from 2010, and what struck me was that some of the posts were from people who are now dx'd with mets, even after taking Tamoxifen. I hate BC!!!

Pokemom1959

I've been on Tamoxifen since May - for 6 months, no side effects other than hot flashes, which I controlled with Lexapro. Now, in the last month, I've started suffering from joint and bone pain in my left ankle/lower leg to the point where it's hard to walk and extreme fatigue - I'm always tired. I'm hoping to work through them - so far, I've taken the Tamox every night like clockwork. Maybe I will try the splitting the pill in half thing and see if that works better. :